B12 and folate deficiency: Hi everyone... - Pernicious Anaemi...

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B12 and folate deficiency

Kenbowns
Kenbowns
•72 Replies

Hi everyone,

This is my first post but I have been gathering much info from all your posts during the past few days in readiness for my GP appointment today.

I have had tingling in my hands,arms, feet and calves for almost 9 months now, I have repeated this plenty of times to my GP, other symptoms include tinnitus, heart thumping, smell and taste impairment. I also have Psoriatic Arthritis.

At the GP's today I was armed with paperwork which included the recommended advice from BCSH and the UKNEQAS B12 alert, Naturally he wasn't very interested in these.

A few of my blood levels include 179 serum B12, 2 folate and 103 mcv.

Also had intrinsic factor result of ok no further action but of course this could be a false normal ?

After a little cajoling he is starting me on B12 injections tomorrow and has given me 5cg folic acid to take.

A couple of questions please, I read that a blood sample should be taken and stored for MMA before treatment begins in in the event that I have no improvement how is this done ?

Also read that the B12 should be done before starting the folic acid, Why ? My GP reception says " well we always give them together "

TIA

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Galixie
Galixie

"Also read that the B12 should be done before starting the folic acid, Why ? My GP reception says " well we always give them together ""

It's a little bit confusing, but it is actually just fine to get them together. The real risk is if a doctor assumed there was a folic acid deficiency and treated that alone without any treatment for a coexisting B12 deficiency. If a patient shows macrocytic anemia (which is caused by either folate or B12 deficiency) and a doctor gives the patient just folic acid, the macrocytic anemia will improve. However, if the patient is really B12 deficient the folic acid will not treat the nerve damage that occurs with B12 deficiency. So the recommendation to give B12 first is really just an attempt to keep from missing treating the real problem.

That was really rambling, but I hope it makes sense. :)

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Kenbowns
Kenbowns
in reply to Galixie

Thank you for your prompt reply and perfectly understandable explanation G.

As you can see from my mcv I do have a bit of macrocytic anaemia going on ....I think ? From your explanation b12 and folate deficiency can cause this, funny that the GP never mentioned this and that it was all down to the alcohol I was consuming lol, he made me feel as though I was an alcoholic when in fact all that I do is enjoy a sociable drink of a couple of pints on some evenings.

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PAS-admin
PAS-adminAdministrator
in reply to Kenbowns

You have B12 and folate deficiency, and that's why the MCV is high. So yes, it could be macrocytic anaemia (depending on Hb, but macrocytosis it is) Folate alone can, besides hide the anaemia and therefor diagnosis of B12 deficiency, increase neuro symptoms. I hope you are getting the right loading dose of B12. That the intrinsic factor is negative does not rule out PA. MMA does not have to be tested if B12 deficiency is clear. Shame it took 9 months to get diagnosed..get well soon!

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Kenbowns
Kenbowns
in reply to PAS-admin

If I have macrocytosis what other symptoms would you expect, I also have unexplained pain and fluttering in my left side and I am constantly red in the face down my chest and into my groin area, I go very red after a meal ?

Will the b12 and folate treatment bring my mcv back into range ?

Apologies but in my original post I forgot to say that I have been on ppi's for a good while so I think my lack of b12 absorbtion is more likely to be this than pa (hopefully).

As for the loading dose tomorrow I have to admit that as I am at the start of my treatment I haven't a clue !! What should it be ?

Many thanks for you help so far.

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PAS-admin
PAS-adminAdministrator
in reply to Kenbowns

See the info I posted in the pinned posts on the start screen. A lot of the info is on our website pernicious-anaemia-society....

Symptoms: pernicious-anaemia-society....

You should be getting frequent injections to start with, from alternating days till at least once a week. (depending on doc and symptoms)

If you've been on ppi's more afew years, the yes, that could be the cuase. Question is if it's the only one. Besides you're taking those for a reason, gastritis?

Yes, the B12 and folate will bring your MCV down in a matter of weeks, very quickly. Bloodvalues usually get back to normal quite fast, the often symptoms take a lot longer to go away(unfortunately)

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Gambit62
Gambit62Administrator
in reply to Kenbowns

B12 is used by a number of processes in the body and it can be very difficult to unravel which process is going wrong and causing the symptoms. Macrocytosis will make your blood less efficient at carrying oxygen around your body - which would/could cause lack of energy, fatigue, dizziness and a whole raft of other symptoms. However, B12 is also used to maintain the lining around nerve cells that enables them to carry nerve signals properly which can affect the nervous system. The effects on the autonomic system (which controls things like breathing that we do without thinking and things that we do semi-consciously) may actually mimic some of the effects of macrocytosis as your cells think they aren't getting enough oxygen. B12 is also used by the processes that release energy in muscles so can/will cause muscle weakness. Some symptoms of B12 - eg pains in feet and legs - may actually be a combination of two of these - effect on nerve cells and the muscle weakness leading to fallen arches.

Macrocytosis occurs because there isn't enough B12 and/or folate in your bone marrow to ensure that new red blood cells form properly. It will be corrected as old blood cells are replaced by new blood cells that have formed properly. This happens as blood cells die. Red blood cells live for around 120 days so it will take several months to be corrected.

The symptoms of low stomach acidity are very similar to high stomach acidity and low stomach acidity is frequently mistreated as high stomach acidity ... just making the situation worse as far as B12 absorption is concerned. PA would result in low stomach acidity so I wouldn't rule it out as a factor.

The intention of the guidelines was to prevent a situation in which someone was treated with folate only though both folate and B12 are low however it is poorly worded and hence the confusion. You need folate in order to use and process B12 so if you are deficient in both you need both at the same time.

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_tracy_
_tracy_
in reply to Kenbowns

B12 deficiency can affect your autonomic nerves, which among other things control skin temperature by dilation/constriction of blood vessels. After you eat, blood rushes to your GI system to aid in digestion. Your autonomic nerves try to adjust for losing blood from other areas in your body. Apparently they don't function properly and are overcompensating by dilating too much; hence you turn red. You may be better off by eating smaller meals more frequently.

Nerves can heal, but it takes a long time (a year or more). Make sure you get sufficient B12 so your condition doesn't worsen. Buy it over the internet and self-inject if you have to.

Does this redness hurt at all? If not, consider yourself lucky as there are a number of people who find this condition quite painful. It's called erythromelalgia, google it. It can affect any area of the body but is more commonly found in the extremities (feet and hands). I have it in my feet, it was triggered by a B12 deficiency caused by pernicious anemia.

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Kenbowns
Kenbowns
in reply to _tracy_

Thanks for this Tracy, I will look into this.

I don't have red hands or feet but my ankles throb although this was eased during the loading injections.

The redness is not always there but when it is, it is my face, chest, stomach and groin areas.

Earlier this year I saw a private consultant Haemotologist to ask about the possibility of Polycythemia but he seemed to think not.

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Polaris
Polaris

Re your last paragraph, you were right to question taking folic acid before treatment with vitamin B12.

Folic acid should never be taken while B12 is very low as it gets 'trapped', cannot be used, and could make neurological symptoms worse :

"High levels of folate are normally okay as long as your vitamin B12 level is also normal. Cells need vitamin B12 to use folic acid and when vitamin B12 levels are too low, folic acid cannot be used and builds up in the blood." :

gbhealthwatch.com/Nutri...

.............

Re. masking of B12 deficiency and other information:

Sally Pacholok and various specialists also talk about the dangers of folic acid as well as masking B12 deficiency in this film :

Haemotologist's quote:

"If you treat someone with B 12 def. with folic acid, you can either precipitate neurological abnormalities or, if the patient already has neurological abnormalities, you can make them worse. So folic acid should never be given empirically unless the B12 status is normal."

.............

cmim.org/pdf2014/funcion.ph... :

"If there is noncomitant B12 and folic acid deficiency, then B12 must be started first to avoid precipitating sub acute degeneration of the spinal cord.

In patients with isolated vitamin B12 deficiency and anaemia, additional folic acid is recommended until vitamin B12 is replete to prevent subsequent folate deficiency after replenishment of B12 stores."

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Kenbowns
Kenbowns
in reply to Polaris

Re ppi, I was only prescribed these as preventatve of damage whilst taking naproxen, I didn't have any other stomach issues and in fact I haven't taken a ppi for the past few days with my GP's agreement and thus far no real detriment.

Re taking folic acid, now I am very confused, Galixie states that this is normal once that b12 deficiency has been established but Polaris states that the folate should not start until b12 levels have normalised !!!!!!

HELP, so which is correct ? I am due to start b12 and folate treatment today, my b12 is at 179 with neurological symptoms (tingling in hands and feet etc and tinnitus ) and my folate is 2. Also I am pretty sure that my gp is starting all this off and actually skipping the NICE guidelines of a MMA test and then administer my b12.

Sorry to throw so many late concerns at you all.

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PAS-admin
PAS-adminAdministrator
in reply to Kenbowns

Wait with the folic acid until after the B12 injection so start that one tomorrow, and the B12 today.

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PAS-admin
PAS-adminAdministrator
in reply to PAS-admin

Your deficiencies are clear, MMA test is not absolutely necessary. Testing IF antibodies is, but you can do that later. Focus on your treatment now first and get better :) As long as you are getting the correct loading dose of course, so check that.

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Kenbowns
Kenbowns
in reply to PAS-admin

Thank you admin

Ifa has been done but came back ' ok no further action '

Also my haemoglobin is on the high side of normal so would expect my deciciency to be dietry and ppi related as opposed to pa.....am I thinking this correctly ?

No one has been able to answer my constant red face as above lol.The docs dont know and I also paid to see a consultant haemotologist when my symptoms were looking a little like Polycythemia, consultant said unlikely but have fbc done regularly to monitor haemoglobin and haematocrit.

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PAS-admin
PAS-adminAdministrator
in reply to Kenbowns

Ah yes, the negative IF, that doesn't say anything. That you don't have anaemia also does not say anything. It could still be any number of causes. There are loads, I have a list but it's in dutch ;) stichtingb12tekort.nl/vitam... (probably google translate will mess that up really good ;) ) Anyway, treatment is priority now, and the right treatment.

The red face could be lots of things. Like thyroid fe, high bloodpressure, and numerous other things. Not B12 related as fas as I know (the opposite actually, more people looking ghostly white) Ask your doc about it if it doesn't go away or if you have symptoms that could be related to thyroid/blood pressure etc.

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Kenbowns
Kenbowns
in reply to PAS-admin

Thank you admin, lets see how the treatment goes then, surely I will see some improvements with my folate as low as that .

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PAS-admin
PAS-adminAdministrator
in reply to Kenbowns

Absolutely:) and if you're getting b12 at least twice a week as well, probably within a week or two.

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Gambit62
Gambit62Administrator
in reply to Kenbowns

the symptoms of a B12 deficiency - which are the symptoms of PA - are the same whatever the cause so the lack of any obvious anaemia doesn't mean anything - the anaemia in PA is an historical accident coming from the fact that it was first identified as an anaemia that lead to neurological and psychological problems and death. In fact significant numbers of people present with neurological and neuro-psychiatric problems long first and it isn't the anaemia that causes the neurological and psychological problems - it is the lack of B12. I've had neuropsychiatric problems for 40+ years, neurological problems for 25+years and I still haven't developed anaemia.

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Gambit62
Gambit62Administrator
in reply to Kenbowns

The NICE guidelines don't actually mention MMA. They do mention referal to a haemo to establish the cause. Not entirely convinced, personally that this is always helpfuld as levels in blood are only part of the equation with a B12 deficiency.

If you look at the video clip posted by Polaris you will notice that the mention of not treating with folate is linked to general risk of masking macrocytosis as a potential for diagnosing a B12 deficiency. As you already have a B12 deficiency diagnosed and are being treated that is a little irrelevant. I know it is very confusing and Polaris has a very different interpretation of the interaction between using folate when both folate and B12 deficiencies are present. However the reality is that you need folate to use and process B12 so not treating a folate deficiency at the same time as a B12 deficiency makes no logical sense to me.

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Kenbowns
Kenbowns
in reply to Gambit62

Ok gambit thank you.

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Kenbowns
Kenbowns
in reply to Gambit62

Gambit, I think it may have been a bcsh flowchart that said to test for mma for people with Neurological symptoms, sorry.

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Gambit62
Gambit62Administrator
in reply to Kenbowns

Not a problem

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Polaris
Polaris
in reply to Gambit62

I have not put an interpretation on it Gambit, it is the expert and researched interpretation.

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Gambit62
Gambit62Administrator
in reply to Polaris

As ever Polaris, we just need to agree to disagree on this - as we are interpreting what the expert is saying differently

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Polaris
Polaris
in reply to Polaris

PS. If I WERE to put my own interpretation on it, it would be that, although all the B vitamins usually work synchronistically, the danger is that, when supplementing B12 and folic acid together, folic acid is more bio available than B12, (which as you know goes through a more complicated process) so that folic acid might begin to build up and get 'trapped' (as quoted above) before there is enough B12 to work with it. To risk making neurological symptoms worse would be disastrous! So it must surely be safer to wait a bit and treat the B12 deficiency first, even if anaemic? I hasten to add that this is pure speculation and I am no expert !

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PAS-admin
PAS-adminAdministrator
in reply to Polaris

The expert in the video means never give folate until you give B12 when that is low. When B12 is normal (whatever that might be ;) ) then it's fine. I'm no fan of the super high folate dosage (unless is some specific cases), folate gets absorbed pretty good and fast usually, the lower dose does not give that much risk. Why not wait? Because a folate deficiency needs to be treated as well. If you don't the B12 is not doing much for recovery. Been there, done that.

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Polaris
Polaris
in reply to PAS-admin

I understand that and am not saying that the folic acid deficiency should not be treated 🙂

My relative always had very high folic acid with low B12 - neurological symptoms became devastating - I would say much more research needs to be done.

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Kenbowns
Kenbowns

Just returned from GP, here is how it went.

Me to practice nurse, " what regime and loading dose has doc recommended " ?

PN just one jab of 1000 today and see how it goes along with folate tabs

Me, all that this may do is elevate my b12 into the area above 180 which is what the gp would like to call as normal, how the hell is this going to repair 9 months worth of peripheral nerve damage. The NICE guidelines should be followed and inject every other day until there is no further improvement.

PN " that is just for pernicious anaemia "

Me, no it isn't, it is also for b12 deficiency with neurological peripheral damage.

PN I think you will need to get the gp to agree to that.

Me, ok then, had the jab and arranged to see GP again next week whereupon I will ask him to explain to me why he is unable to follow the NICE guidelines.

In the meantime in an attempt to get my b12 levels up I intend to make sure there is plenty of the right foods going in and supplement orally on a daily basis, please recommend a good one if possible, is nu u ok ?

Btw today I saw my levels for last March, 3.9 folate where 3.0 is low and 471 b12 which suggests that I may be absorbing ok but levels dropping due to ppi ( now stopped by agreement )

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PAS-admin
PAS-adminAdministrator
in reply to Kenbowns

Could be but normally you have a supply of B12 for years. Taking ppi's for a little while doesn't result in deficiency. Supplements: get a sublingial with 1000mcg hydroxocobalamin or methyl daily. NOW foods active B12 is a good one, Solgar has a good methyl, Biotics is good (hydroxo). Many more but don't know which ones you can get there.

and 1 injection cause it's not PA? djeez british docs are the worst I believe..the cause of the deficiency does not matter at all for the treatment, that is always the same. Loading dose followed by maintenance. Good luck with the GP!

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Kenbowns
Kenbowns
in reply to PAS-admin

Thank you admin

NICE guidelines also say urgent referral to Haemotologist, although as suggested this still may not be ideal there is also the issue of my redness.

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Kenbowns
Kenbowns
in reply to Kenbowns

Upon further reading, re my low folate levels 2.0ng/ml (3.4_15.8)

It appears that peripheral neuropathy could be related to this, additionally, on the b12def website Pat Kornik explains that a low folate count will drag down b12 count, I am now wondering if this is more my problem than concentrating on getting my gp to follow the NICE guidelines on b12.

I have been prescribed 5mg folic acid to take daily and wondering if this would solve some of my issues ??

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PAS-admin
PAS-adminAdministrator
in reply to Kenbowns

Yes, like I said, but you need both. One injection B12 is not good, you need at least 2 a week for a while because of the neuropathy. If you do have B12 deficiency, which is likely I believe, all the folate is not gonna do much except possibly make the neuropathy worse.

Re Pat: a (severe) folate deficiency can (can not does) give a false low serum B12 yes. But still, I would really get at least the loading dose and go from there.

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Kenbowns
Kenbowns
in reply to PAS-admin

Ok thank you

Now wondering whether to start on the folic acid without more than 1 b12 jab ? I suppose the gp would say take it.

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PAS-admin
PAS-adminAdministrator
in reply to Kenbowns

He would yes, I would not. Tell him you want the treatment for B12 deficiency according to the guidelines and that you are not comfortable taking high dose folate without it (think it even states in the leaflet in the box don't take when b12def) . If he brings up the you don't have PA nonsense tell him that it's impossible to tell, ad besides that it should not matter for the correct treatment. Be assertive, but not angry ;) Goodluck!

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Kenbowns
Kenbowns
in reply to PAS-admin

Thank you again

You are correct, it does say it on the leaflet in the box.

But as b12 and folate have to work together I have taken it as I had b12 jab yesterday and will continue up until next Wednesday when I have my next gp appointment.

I want to try to get something out of this jab at least, can I really do any harm from 6 days on folic acid ?

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PAS-admin
PAS-adminAdministrator
in reply to Kenbowns

No I guess not. I didn't mean not to take any, meant I would not say that (what the GP would say). Just monitor how you feel.

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Kenbowns
Kenbowns
in reply to PAS-admin

Ah I see lol, I will report back following next Wednesdays appt.

I don't suppose gp's are obliged to follow the NICE guidelines are they ? After all thats just what they are, guidelines, I suppose you could argue that it was bad practice not to do so though ?

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PAS-admin
PAS-adminAdministrator
in reply to Kenbowns

You could (and maybe you should ;) ) Let's just hope you won't have to say much and the GP has no objection to treating you as he would someone with PA, as he can't say you don't have it.

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Kenbowns
Kenbowns
in reply to PAS-admin

Is pas membership solely for people with pas or can someone with b12 def join up ?

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PAS-admin
PAS-adminAdministrator
in reply to Kenbowns

Well, I've been a member for yeeears so... ;)

(not official diagnosed with PA)

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Kenbowns
Kenbowns
in reply to PAS-admin

Sounds fair enough lol

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Kenbowns
Kenbowns
in reply to Kenbowns

Hi again

Really need to get my folate levels up, my question is, would any b12 jabs that I have in the future skew any real folate result in the same way that it makes the b12 def inaccurate ?

Thanks.

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PAS-admin
PAS-adminAdministrator
in reply to Kenbowns

No.

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Kenbowns
Kenbowns
in reply to PAS-admin

UPDATE

Following much verbal jousting and reminders about NICE guidelines also the notes in Folic acid prescription warning of the dangers of taking this with untreated B12 def, the gp has given me 3 weeks alternate days b12 injections.

Some of his comments were, 'they are only guidelines' and 'you do not have pa because the intrinsic factor test was negative' , both points amongst others I argued against due to being well armed from the wealth of info provided by you all...thank you.

What I do find strange is, he brought up a document on his pc with all the usual guidelines that we have all seen from nice and bchc, he says that they are well aware of them all and have been treating this illness for a long time !!!!!!

I know that I am new to all this but if they are aware of all these guidelines why wouldn't you use them ?? I can't get my head around it, it's just banal.

A further question please, unfortunately, due to hols in Spain I will miss the last 2 of these jabs, is it possible to buy b12 otc in Spain and ask the selling pharmacy to administer them ?

Thanks again, Ken.

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PAS-admin
PAS-adminAdministrator
in reply to Kenbowns

ah brilliant you got them, well done!

The GP is, I believe, telling a little lie when he said he's well aware of the guidelines. Think he probably never saw them before or really read them ;) just covering his ass...

And yes, it's possible to get injections in Spain, but probably cyanocobalamin. You could take some ampoules with you as well and have them done there (if that's possible ?) Someone on the forum might know the rules better than me.

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_tracy_
_tracy_
in reply to Kenbowns

Martyn Hooper, who started the PAS, had several IF antibodies tests at different times. It wasn't until his third try that his result was positive. This test is known to have false negatives about half the time. The other PA test, parietal cell antibodies, is known to have false positives. Unfortunately there are no tests in wide use today that are totally reliable and accurate.

So you could have PA even though the IF test was negative. Do you have any blood relatives with PA? If so it's more likely you could have it too as it appears there is a genetic link, at least for some. However, taking PPIs long term can cause a B12 deficiency because you need both intrinsic factor and stomach acid to properly absorb B12 from your food.

Sadly, the Schilling test is no longer used. It used radioactively labeled B12 to track how much is actually absorbed in the body. I think the special handling required for radioactive compounds and equipment needed to measure levels made the test complicated and expensive.

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Polaris
Polaris

Looking for something else, I've just come across this :

ncbi.nlm.nih.gov/m/pubmed/2...

" Potential detrimental effects of high folic acid intake may not be limited to the elderly nor to those with B12 deficiency. A study from India linked maternal high RBC folate to increased insulin resistance in offspring. Our study suggested that excessive folic acid intake is associated with lower natural killer cells activity in elderly women. In a recent study we found that the risk for unilateral retinoblastoma in offspring is 4 fold higher in women that are homozygotes for the 19 bp deletion in the DHFR gene and took folic acid supplement during pregnancy. In the elderly this polymorphism is associated with lower memory and executive scores, both being significantly worse in those with high plasma folate. These and other data strongly imply that excessive intake of folic acid is not always safe in certain populations of different age and ethnical/genetic background."

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Kenbowns
Kenbowns
in reply to Polaris

Ridiculous

Just been for my first b12 jab and to arrange future dates for next 2 weeks.

Mon, Wed ok, Fri practice nurse on day off, no one else available.

Following week

Mon bank holiday so no jab again, wed, fri should be ok

So, out of the 9 prescribed jabs I will have only 5, admittedly I lose 2 of them due to my hols but that wouldn't have been the case if they had started them last week instead of me having to have an argument yesterday to start them today.

I have asked my local pharmacy if they can do this but they don't.

PS I was also due to have a FBC done today too, GP blocked it this morning saying it was too early but I was monitoring other factors at the recommendation of the consultant Haemotologist.

Feels like a revenge attack to me.

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PAS-admin
PAS-adminAdministrator
in reply to Kenbowns

and tuesday ? For the second week instead of monday?

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Kenbowns
Kenbowns
in reply to PAS-admin

That would mean jabs on consecutive days, I asked about this, practice nurse looked in mmi type pamphlet which stated every other day only !!!!!

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PAS-admin
PAS-adminAdministrator
in reply to Kenbowns

Well, it's possible on consecutive days but it's their fault you can't get the proper treatment. Can't the GP himself give it or, I don't know, a backup surgery? Or the nurses that come to someone's house when they're ill?

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Kenbowns
Kenbowns
in reply to PAS-admin

I will ask again on Monday but they are pretty unhelpful, they say ' what can I do if I am not here '

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PAS-admin
PAS-adminAdministrator
in reply to Kenbowns

Your answer: help me find someone who is there when I need treatment...but I understand, it's so difficult all, and frustrating. Goodluck

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Kenbowns
Kenbowns
in reply to PAS-admin

Thanks for your support admin.

Re folic acid 5mg for 3 months

As I have now obtained 6 b12 jabs, is this going to be sufficient to continue for 3 months with folic acid ? I have also bought some sub lingual b12 which I can use following the jabs but is it all enough considering your warning about folic acid ?

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PAS-admin
PAS-adminAdministrator
in reply to Kenbowns

Yes, should be fine as long as B12 comes in. Although you probably don't need the 5mg after the first month, and you could keep it on good level with 2 x 5mg a week. (unless your sublinguals have folate in them, then of course skip the 5mg) But see how it goes, how you feel after the loading dose (and your holiday :) )

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Kenbowns
Kenbowns
in reply to PAS-admin

Thanks very much, folate is low though 2, so would want this much higher.

Hol much needed and where are the smilies ? Lol

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Polaris
Polaris
in reply to Kenbowns

Not sure what you mean exactly 🤔May not apply to you Kenbowns but not ridiculous if you are an older woman, vegetarian or of certain genetic/ ethnic origin 🙂

I hope your injections sort out.

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Kenbowns
Kenbowns
in reply to Polaris

Hi Polaris

My 'ridiculous' statement was a dig at my health centre and nothing to do with your post.

Thanks for the good wishes.

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Polaris
Polaris
in reply to Kenbowns

Thanks for clarifying Kenbowns 😊

All good wishes.

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Sleepybunny
Sleepybunny

"

"Tell him you want the treatment for B12 deficiency according to the guidelines and that you are not comfortable taking high dose folate without it (think it even states in the leaflet in the box don't take when b12def) ."

"they say ' what can I do if I am not here '"

Pleased to hear that you got your treatment although it will be hard to fit all your injections in. Would the GP/nurse be willing to show you how to self inject and give you a supply?

See Management section in next link about folate ddeficiency.

patient.info/doctor/folate-...

Have you seen teh summary of mainly UK B12 documents fbirder has compiled. If you click on link to fbirder's profile page above, there is a link to summary and there's a link in one of teh pinned posts on this forum.

The summary has some very useful quotes which come in handy when medics show some of the common misunderstandings about b12 deficiency. I take a copy to my appts.

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Kenbowns
Kenbowns
in reply to Sleepybunny

Hi again SB

The 2 jabs that I would have missed in the UK have now been sorted, however I will miss the last 2 due to hols in Spain, I have asked my practice nurse about taking these 2 ampoules with me but got negatives.

I have posted on a local forum in Spain about how I could obtain these otc and possibly get a pharmacy to administer, unfortunately no response.

There must be someone within the PAS that has gone through this issue before ?

As I travel on the 4th Sept I do not have much time to get things in order and access to a gp appoinment would be later than this date.

Also as I am new to this defeciency I do not have the know how either, I would very much welcome ideas from members of the community.

TIA, Ken.

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Sleepybunny
Sleepybunny

"but if they are aware of all these guidelines why wouldn't you use them ??"

The local CCG for your area if you are based in England may be able to tell you if the BCSH Cobalamin and Folate Guidlines are being followed in your area.

nhs.uk/servicedirectories/p...

It's also possible that the MPs might be able to find out.They can be useful for finding out answers when requests from members of the public are unanswered. Freedom of Information requests are another way of finding out, possibly to CCG or local NHS website.

I found out that some areas across UK have their own local NHS B12 deficiency guidelines. When I found out about these local guidelines it helped me to understand why I had not got the treatment I expected.

These local B12 Guidelines might be found by an internet search, a search on local NHS website, a FOI (Freedom Of Information) request to local NHS website or possibly a request for help to MP. Some of these local guidelines have not been updated for several years and not updated since the BCSH CObalamin and Folate guidelines came out in 2014.

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Kenbowns
Kenbowns
in reply to Sleepybunny

Yes I think that you are right, I am based in S.Yorks and my health centre gave me a document headed NHS FORTH VALLEY b12 and folate: a practical guide, this doc was updated on 24.06.15

A couple of relevant extracts

B12>180 this is normal, no action required

Treatment

If there are neurological features present then the situation is different; the BNF loading schedule should be followed then B12 should be given every 2 months. (So this is even in their own regional guidelines, although not until further improvement ?)

The role of Folate

Secondary folate deficiency is often seen as a consequence of B12 defeciency-in these situations patients often require folic acid and B12.

Moderate B12 deficiency may occur secondary to severe folate deficiency-B12 replacement in this situation may only be needed until folate stores are replenished.

I am very interested in the above 2 extracts as in March my B12 was 471 and serum folate 3.9 (3.4-15.8) but by July my B12 was 179 and folate 2, as folate stores can deplete more quickly than B12 I am wondering if the second above extract more applies to me ? What sort of number is termed as severe ?

At the moment I am halfway through the loading course and have been taking folic acid for 14 days, at times I am very lightheaded and I am experiencing some discomfort in my shoulder and neck (the thought of folic acid damage terrifies me), my heart always seems to be thumping too but it was like this before any treatment, gp unconcerned.

I did mention in an earlier post that my mcv was 103 but forgot to mention that my mean cell haemoglobin level was 35.9 (27.0 -32.5) is there any significance to this ?

Sorry for all the questions but I am really trying to get the hang of what is going on as it is now pretty obvious that this info will not come from my gp.

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Gambit62
Gambit62Administrator
in reply to Kenbowns

the high MCH implies that you probably have signs of macrocytosis - red blood cells which are slight larger and rounder than normal - this is a classic sign of a B12 deficiency - and means that the red blood cells may be less efficient at picking up oxygen in your lungs and releasing it to cells. This will coorect as the B12 deficiency corrects but will take several months as new healthy blood cells are only made as the old ones die and the average life of a red blood cell is about 120 days. This form of anaemia can explain some of the symptoms of a B12 deficiency but doesn't tell the whole story.

Can't cope about the mcv without range but think it is also on the high side - another sign of macrocytosis.

It is quite common for aches and pains to get worse in the early stages of B12 treatment - possibly because the communications from nerve cells improves but the brain has got used to interpreting signals that are much lower so it over-reacts a bit.

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Kenbowns
Kenbowns
in reply to Gambit62

Thanks Gambit

The range is 82-100

In fairness to you, you did say that it was macrocytosis in a reply a couple of weeks ago, I dont expect anyone in your position to be able to recall every reply, I just wanted to add in the mch too for some clarity.

Is this still classed as having anaemia as my haemoglobin levels are on the high side ? I thought they had to be low ?

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PAS-admin
PAS-adminAdministrator
in reply to Kenbowns

It's macrocytosis, not technically anaemia. Folate deficiency also gives macrocytosis btw. Most likely those values are ok by now although it can take a bit longer as well.

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Sleepybunny
Sleepybunny

"B12>180 this is normal, no action required"

Think the BCSH Cobalamin and Folate Guidelines on page 29 mentions that results under 200 mean probable B12 deficiency and that patients above 200 may need treatment if symptomatic.

Has your GP seen page 8 and page 29 in the BCSH Cobalamin and Folate document?

The CCG might be able to tell you that if the local B12 guidelines differ from the BCSH Cobalamin and Folate Guidelines which one takes precedence or as you are in England perhaps NHS england might be able to help or the MP?

england.nhs.uk/contact-us/c...

"I did mention in an earlier post that my mcv was 103 but forgot to mention that my mean cell haemoglobin level was 35.9 (27.0 -32.5) is there any significance to this ?"

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

labtestsonline.org.uk/under...

patient.info/doctor/folate-...

labtestsonline.org.uk/under...

I am not a medic just a person who has struggled to get a diagnosis.

Reply
Kenbowns
Kenbowns
in reply to Sleepybunny

UPDATE

I have now had 8 b12 jabs and a further 2 when I get home from holiday at which point I intend to see the gp about continuing ' until there is no further improvement ' due to neuropathy.

I will continue to take folic acid as folate was low too (2), I will also be taking b12 sublinguals whilst on holiday.

I do have Macrocytosis (103)

I think that I have made some small progress in that I feel a little better in myself and the fog has cleared just a little but not entirely.

Other symptoms remain the same as before, tinnitus, tingling in hands, arms, feet and calves but also I still have tremor.

I still find myself really having to concentrate just to have a conversation and to make all the words come out correctly, also I have light headedness and am a little disorientated walking in the dark.

It is only roughly 3 weeks since the start of my treatment, maybe I am expecting a little bit too much too soon ? Would the ' real ' time of expectancy be in around another couple of months when my red blood cells have had the time to regenerate ?

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Sleepybunny
Sleepybunny

It took me months to notice a real difference..I had to resort to self treatment as I could not get treatment from NHS.

Even if I had succeeded at that point in getting treatment from NHS I don't think it would have been enough for me. I seem to need huge amounts of b12.

I think in my case no treatment over many years has left me with some permanent damage.

People's responses to b12 are very individual. Some people have a response very quickly and some take longer and sadly a few do not experience much change at all in their symptoms.

I feel sorry for those like me who take a long time to show a response especially as the "BCSH Cobalamin and Folate guidelines" mentions a review after 3 weeks of every other day treatment for those with b12 deficiency with neuro symptoms. I would not have shown any change at 3 weeks.

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Kenbowns
Kenbowns
in reply to Sleepybunny

Thanks for your reply sb

I definitely do not think that reverting to the maintainence of every 2 months would be anywhere near enough for me, not enough has changed, I will be pushing for another couple of months of b12 jabs but I realise that I will be very very lucky if my gp agrees to that !!

I am really reluctant at this time to self inject, I am not worried in any way about needles, perhaps just a lack of confidence and the unknown.

Reply
Sleepybunny
Sleepybunny

Hi,

I never wanted to self treat either and did everything I could to get treatment from NHS eg polite letters containing info about b12 and pointing out previous low B12 test results and typical symptoms, I had meetings with medics but got nowhere.

It was an absolutely last resort to self treat but in my opinion it was self treat or develop dementia type symptoms, severe mental health problems and risk spinal degeneration.

I wish you all the best with getting the right treatment from NHS. If you ahve time please update us on teh forum,.

Sometimes it is better to update by starting a new thread as sometimes adding posts to old threads is not noticed.

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